Hi all - so my recent MRI (I have RRMS and was diagnosed in 2018) has shown a new lesion so I am now eligible for DMT treatment…I don’t know if I am sad or pleased that I am now eligible, I guess a combination of both
Anyway, I’ve been offered several DMT options, and despite doing my own research, I thought I’d ask the best people, you guys
Has anyone got any thoughts/experiences on the following:-
Interferons (don’t like the sound of constantly having flu symptoms)
Copaxone (I hear that hair loss could be a side effect )
Ponesimod
Cladribine
B-cell therapies - ocrelizumab, ofatumumab or ublituximab
As I said, any advice or feedback would be much appreciated.
My mobility and balance continue to be an issue with just my left leg…
I was on one of the interferons for 10 years from 2000. I didn’t get much in the way of side effects, but in terms of actual effectiveness they’re not up to much and neither is Copaxone. Better than nothing, and I was grateful at the time to be on anything, but I wish something better had been available at the time.
Much depends on how your MS is behaving and what your priorities are. My priority has always been to get the most effective treatment availa le to me, and after 15 years on natalizumab, it still is. Other people have other priorities - compatibility with pregnancy or whatever. It depends on what is most important to you at this stage of your life.
You might want to take a look at these. For me, they are far and away the best tool for comparing like with like.
Very active RRMS. Or it’s very active given half a chance: natalizumab has kept it bound and gagged for 15 years. Natalizumab is one of the biologicals - you’ll read about it on the info cards. It’s a powerful drug and has potential side effects to match, but that tends to be the way with these things: the bigger the benefits the greater the risks. In my case, the risks always seemed well worth it, and they still do. But your MS usually does need to be pretty active for you to be offered it.
I was diagnosed with RRMS in 2020 just after my 50th and started Avonex in September’20. In terms of side effects they haven’t been too bad, I take ibuprofen an hour before I take my injection. I maybe don’t sleep as well the evening I take my jag and can be shivery in bed that evening.
Unfortunately, my recent MRI has shown some change and I may have to change medication and I’m waiting on a further MRI.
I am with @alison100 on the ‘hit is hard as early as possible’ view.
I take Kesimpta which is one of the most effective DMTs, and it’s been great. No side effects apart from feeling a bit rough for a day after the first loading dose, and having an hour or two of heavy legs feeling sometimes after my monthly doses. I haven’t caught any infections and I’m doing ok.
Have you got any further with making a choice about treatment?
Thanks Alison - not yet made a choice but have added your recommendation to my list of possibles My neurologist appointment isb’t until mid June, so I wanted to be prepped and educated with my options before the meet.
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